"It's Not a Big Deal...They're Literally Only Changing 1 Word"

There's been a bit of a backlash to the folks like us who see the current DSM revision as a big deal for the autism community. Let me remind you why it matters.

Any text revisions that occur between releases of numericial volumes are typically considered minor, but also establish guidelines for the direction of presently accepted ideas on these conditions. We remain concerned about the implications of these supposedly minor changes as we lead into a period of revising for DSM-6.

It's Ensconced in the Foundations of Clinical Education

Every doctor, clinician, counselor, therapist, social worker, or psychiatric practitioner in the West is educated on the latest Diagnostic and Statistical Manual of Mental Disorders.

In my school, we have a test on each of the disorders and their diagnostic criteria; we have to memorize them verbatim and demonstrate that we can implement them in cases as per DSM guidelines. It's at the foundation of our training in becoming diagnosticians of psychiatric illness.

When we make even small changes like this to foundational manuals like the DSM—changes that have been explicitly stated to be in the interest of reducing the prevalence rate of autism diagnosis—there is a trickle down effect on the clinical community. Every clinician that comes after us is beholden to that text. If the major institution behind that text (American Psychiatric Association) wants to impose stricter limits on our ability to give a diagnosis (and have those services be covered by insurance boards and government subsidies) then, as clinician advocates, we are in a bit of trouble when it comes to routing autistic people to proper therapy, community supports, and accommodations.

Healthcare Inequities Abound

If you can't get a diagnosis, you can't get insurance or government assistance to cover treatment for that condition. If giving an autism diagnosis to a broad range of presentations is poo-pooed by the psychiatric field, many people will not even be able to evaluated for a diagnosis in the first place. Not everyone has $1000+ dollars to invest in a private diagnostic workup. Not everyone has equal access to diagnosis in the first place. It's a massive systemic issue. It is a big deal.

Unpopular Opinion: Clarifying DSM-5 Autism Criteria Doesn't Mean Restricting Diagnosis

#sorrynotsorry

I'm sorry that you might be missing the ball here with an opinion like that. When a person in a position of extreme privilege and power wants to artificially shrink the prevalence rate of autism diagnosis, we have a big, systemic, motherfucker of a problem, my people.

Adding "clarifying language" to further restrict the DSM-5 criteria goes against all recent peer-reviewed, clinically significant evidence that autism, at its core, is a fundamental difference in neurotype and is HIGHLY prevalent in the global population. Clinicians in this space now believe that more autistic people exist and have existed throughout time. However, it has been our failure as a society and in the medical/behavioral health fields to recognize people with all presentations of autism. People who show less outward impairment, and who have been deemed by the system to have less overall support needs are barred from receiving a diagnosis, even when they themselves have spent countless hours researching in earnest of a self-diagnosis. (While we're on our lil soapbox, it should be said, please remember that we have no idea what someone's social location or support needs are just by looking at them...ever.)

What It Really Means To Us

Any change that supports an artificially-imposed drop in the rate of diagnosis inherently disenfranchises that entire population of people from getting proper care, treatment, insurance coverage, school/workplace accommodations, and social supports to meet their needs. Many autistic people require substantial accommodations to sustain employment or make it through institutions that are designed for neurotypical people, such as academia and the workforce.

People with all levels of support needs rely on proper clinical diagnosis to guide their therapeutic treatment. So, when someone's battle cry from atop the information hierarchy of medicine/behavioral healthcare is to provide less diagnoses for seemingly arbitrary reasons, we have to consider the trickle down and what that means for a population:

• who are already fundamentally denied resources;

• who are already constantly marginalized in every social system;

• who are already routinely barred from receiving proper diagnosis, treatment, and medical care;

• who constantly endure unfathomable acts of ableism and microaggression;

• who are subjected to countless atrocities, violence, and police brutality;

• who face bullying and hatred on a daily basis;

• who face high rates of anxiety, PTSD, and depression;

• who experience job inequities and a lifetime pay disparity;

• who are forced into abusive ABA therapies that fundamentally deny autistic, neurodivergent, and disabled people their rights and autonomy;

• who wind up living in isolation without proper community, representation, and social supports;

• who are subjected to lifetimes of misdiagnosis and missed diagnoses;

• who show one of the highest suicide risks of all of psychiatric populations;

• who have an disproportionately high rate of job failure and unemployment;

• who are constantly denied and fighting for school/workplace accommodations;

• who are also female, nonbinary, and transgender;

• who are people of color;

• who are fat or in atypically shaped bodies;

• who are LGBTQIA+;

• who have multiple comorbidities, health conditions, and disabilities;

• who struggle in all types of relationships and social settings;

• who are constantly told they are wrong and abnormal by the outside world;

• who are fucking sick, tired, and colossally burnt out from masking our way through life in this capitalistic hellscape—

When our best attempt at revising a foundational psychiatric tool is to take away the opportunity for a marginalized group to find representation, community, proper therapeutic treatments, and life-sustaining supports, YOU BET WE'RE CONCERNED. Research also shows that a diagnosis can help autistic people find freedom, self-acceptance, and relief from the suffocating confines of said patriarchal, capitalistic hellscape. We can continue to provide this through the use of a diagnostic framework that explains the autistic neurotype and outlines some basic considerations for support needs.

The true prevalence of autism (and most neurodevelopmental conditions) is already completely underrecognized. It comes down to a lack of clinical education and a lack of access to proper diagnosis for so many people. Artificially lowering the prevalence of diagnosis can only provide even greater challenges for neurodivergent people and their caregivers who are already struggling.

This is a massive systemic problem; and yes, it's bigger than just the DSM-5, which is a pedagogical mainstay in nearly every medical college, counseling school, social work program, and treatment facility. At the very, very least that foundational tool could be up to date and made more inclusive. We need to pave the way for more accessibility, more inclusion, more accommodations, more intuitive care, and more social supports—not less. #micdrop

Our Passion for DSM-5 Revision of the Diagnostic Criteria for Autism

Dr. Michael B First and DSM-5-TR Cover

Background

On March 18, 2022, the American Psychiatric Association (APA) will release the DSM-5-TR which includes updates as to how the criteria for autism spectrum disorder should be interpreted by clinicians. The updated specification seeks to make formal diagnosis less accessible, especially for people who present with less support needs and less outwardly expressed symptoms of social and sensory impairment. Any constricting revisions to these specifications refute current qualitative research on the heterogeneity of the autism spectrum. Any constriction seeks to gatekeep proper diagnosis, continue the spread of misinformation about autistic people, and consequently will bar thousands of people from receiving affirming, life-saving therapies and treatment.

Per a recent podcast, the co-chair of the DSM revision, Dr. Michael B. First, stated that the more conservative criteria seeks to reduce the prevalence rate of autism diagnoses, because being "on the spectrum" is overdiagnosed and has become too culturally prevalent. Dr. First gives zero regard to any current research—research that seeks to validate the experiences of people with all levels of support needs—people from all communities, races, ethnicities, genders, sexual orientations, ability levels, and socioeconomic statuses who fall on the autism spectrum.

Dr. First gives zero concern for how this will harm our communities; how this will harm people of color; how this will harm females; how this will harm non-binary and transgender folx; how this will harm disabled people; and how this will harm people who live with the challenges of being autistic in an allistically-designed world. It seeks to protect insurers from covering affirming therapies and from providing access to psychotherapeutic supports for people on the autism spectrum. Lastly, these revisions seek to further marginalize autistics by diminishing and invalidating our lived experiences as autistic people.

What We're Intending to Do

Over the next several months, we will be putting together a comprehensive file of relevant autism clinical studies, meta-analyses, online resources, and first-hand accounts that seek to tell the true autism story from people who experience the world through the autistic lens. Ultimately, we plan to submit a professionally authored, evidence-backed proposal for DSM-5 revision of autism spectrum disorder to the American Psychiatric Association.

What You Can Do

Sign Our Petition. Head over to change.org to sign our petition. If and when we generate enough signatures to show a substantial impact, the petition will become part of our proposal to the APA for inclusive diagnostic criteria for autism spectrum disorder.

Volunteer. If you'd like to get involved or assist in the effort for visibility in any way, please reach out to our bustling baby startup on our contact page.

Keep Talking About It. These changes affect our loved ones and our communities. Join us in continuing the discourse about neurodivergence and disability.

Stay tuned for updates when the new criteria are released on March 18th.